1. Welcome !!! Christine S. Brown Executive Director

2. 529 adults, families, and professionals in the PKU community 8 countries 32 states

3. The NPKUA works to improve the lives of individuals and families with PKU and pursue a cure.

4. NPKUA Member Organizations  California PKU Coalition  Children’s PKU Network  Florida PKU Foundation  Georgia PKU Connect  Indiana PKU and Allied Disorders Association  Intermountain PKU and Allied Disorders Association  Iowa PKU Foundation  Maryland Alliance of PKU Families  Michaux Family Foundation for PKU  Michigan PKU and Allied Disorders  Mid-Atlantic Connection for PKU and Allied Disorders  Minnesota PKU Foundation  New England Connection for PKU and Allied Disorders  North Texas PKU Association  PKU Organization of Illinois  PKU Pursuits  Tennessee PKU Foundation  WyoMed Campaign Organization

5.  Our research goal is to improve treatment options for PKU and accelerate a cure. By consolidating research dollars, our funds have more impact.

6. Dr. Mike Gibson Dr. Denise Ney Dr. Cary Harding Dr. Harvey Levy Katherine Deming

7. Dr. Kristen Skvorak and Dr. Roberto Gramignoli

8. www.npkua.org

9. My PKU Binder – a comprehensive manual on effectively managing PKU on a daily basis tips across the lifespan emergency preparedness traveling dining out tracking your progress letters, handouts, etc.

10. PKU and the Brain – based on the 2010 MGM Supplement: Phenylketonuria, Psychology and the Brain executive function behavior academic performance ADHD brain scan research

11. The PKU Adult Program is a new initiative that provides information and support for adults living with PKU. Adults with PKU face many challenges. The program provides a one-stop resource for adults seeking to improve their quality of life. This is the only program composed of a national network of adults with PKU, their families, clinicians, and industry leaders to address the variety of needs of adults with PKU.

12. 12 page booklet Easy to read Written by PKU adults for PKU adults Symptoms of not being on diet 3 steps to better management: clinic, making friends with your formula, and what to eat How to count phe Words of encouragement

13. Emergency assistance program that is accessed by clinic Maternal PKU mentoring program

17. PKU T Only Tx Select Disorders 16 Tx All Disorders 16612 Mandate Distribution State by State No MandatePKU OnlySelect Disorders All Disorders

19. PKU has a Seat at the National Table!  Dept of Health and Human Services  Centers for Medicaid and Medicare Services (CMS)  Federal Employee Heath Benefit Plans and Tricare  The White House  Congress  State Legislatures  Federal Employee Heath Benefit Plans and Tricare  National Institute of Health  Agency for Health Care Quality  National Institute of Health  Secretary’s Advisory Council on Heritable Disorders in Newborns and Children

20. THANK YOU!  Board of Directors  Member Organizations  Staff  Members and Volunteers  Donors  Metabolic Clinics  Geneticists, Registered Dieticians and Genetic Counselors  Industry Partners